I had my f/u doctor’s appt today.

First let me tell you the lay of the land – i.e. the new clinic – is comfortable, clean, quite beautiful actually, if a clinic can be. It is in a new building, completely separate from the hospital; all for CF patients. They have food and refreshments available, waiting, out for us to take. Imagine that!

It is a good energy about it, most important.

There are so many things I have learned from this situation . . .

First, my PFT’s really didn’t go up. It is ok. I am still in the 90th percentile. I am 34 years old and for the first 33 years I was at 100% and above. There is still the possibility that it could still. I may have found my new baseline, but could still be too early to tell. I have gone up and down quite a lot in the past, so the narrative continues. Also, to note, I used a new machine; it could be calibrated differently, and in fact probably is. So, I don’t know what my new baseline is with this machine specifically.

Since I have moved here I have used 6-7 different PFT machines, while at home I used the same one for years. They had some upgrades during the 27 years I used it, but this has surpassed that.

This morning I got up at 5am, did my treatment, did Plyometrics, and did the best that I could.

My nerves were surprisingly low. Exercise helps that tremendously, though. And I used my tactic of fooling my brain that my appt wasn’t planned in advanced and it was just another day; that I am well and I feel really healthy, which I do but my brain needed that extra oomph.

Whenever the little voice squeaked in I said, “I did the best that I can – that is all I can do! Forget the rest. I am not dead yet.” Kept going back and forth – “I did the best that I could; I am not dead yet.” It is the end and the beginning.

“What in the hell am I supposed to do?” I said that to my nurse today. “I have been working out 6 days a week for 12 weeks. I do 2 treatments a day, I have worked my butt off – everything else is left up to someone else.” I have lost some volume, 100-200 cc maybe more. It is probably from scarring, damage. I don’t know – they really don’t know either.

This is the funny thing about PFT’s my doctor explained to me today, again. You can feel great and your PFT’s are down, and then you could feel yucky and your PFT’s may go up. PFT’s aren’t a true indicator how you feel, but it is an indicator what kind of lung volume you have, damage, so forth. He also said, although it depends on who you talk to, but more literature seems to support this: that you can’t raise your PFT’s through exercise. It is good for overall health – cardiovascular, diabetes, and other complications that can impact my lung function – but you can’t raise them. It seems a bit mythical to me.

I, of course, kind of live in my own world and believe what I want and pick and chose what I want to believe – as many of us do. I will continue to challenge that theory throughout my life. I still have to tear out my Ziggy Stardust glasses.

All of this doesn’t make sense sometimes and makes you go crazy. My doctor continued by saying that many primary care physicians are ordering PFT’s for their smoking patients much before they feel any real affect from their smoking. He said many times people don’t feel a huge difference until their lung volume gets to 50-60%. It would be like a wake-up call for that particular individual – maybe. “You have x amount of time to heal your lungs otherwise COPD alike is in your future.”

In my situation I couldn’t adequately fight my infections because I was under great stress by a multitude of directions, misunderstandings, and I had no choice but to plow through. I believe I was on the incline after getting treatment for my first two infections, but the respiratory flu hammered me finally and inflamed my airways. They say the flu kills – still – it does. I got a “new” strain of flu that has been appearing apparently in many patients.

To add, since I don’t want to forget; I gained 3 pounds which is HUGE for me. I more than likely gained it in muscle mass, again HUGE! Weight gain is much better than weight loss. Chubby is never good, although I have never met a chubby CF patient.

Bottom line people – stress will kill you. It is like termites eating the wood – slowly, yet efficiently paralyzing your foundation as well as systematically. Need I say more?

The plan now is to stay on a steady stream upward. Stay strong, focused, and if anything comes up I will be much more quick to act – no blood please. In fact, because of being stubborn and scared, my delay probably hurt me; in fact it did. But, I really thought with all my past experience that I could overcome this – and I did, with some loss of lung function.

I said to Sheila today that I probably should had gone in-house a month before I did and would have saved some lung volume; hindsight. Sheila thought I probably should have, she said it at that time, but then I snapped a little and said “Don’t even say that. This was scary; I did what I could with no really know how, or experience – since this was the first. I didn’t know.” I started to get emotionally upset. But, now I do.

Sheila said, “You are doing great. You are 34 and it has taken this much time to put you in the normal range.” She continued by saying, “You must have been exceedingly high before and now you are more in the normal range – after 34 years – that’s amazing.”

Knowing and not knowing makes all the difference, right? It is called experience, which is always hard to get. When you achieve it, and I mean just that, you never lose it – ever.